S.L.E. Lupus Foundation Gathers City Leaders to Advance Professional Lupus Awareness in NYC

Closing the Loop from NY to DC and Back Home in Signature Advocacy Achievement

NEW YORK, NY – May 23, 2012 – More than 50 New York City leaders addressed critical issues affecting the lupus community at the Gaining Ground: The latest on lupus in New York – a briefing hosted by the S.L.E. Lupus Foundation. Presentations outlined the challenges of identifying and treating lupus, recent research advances and critical steps for improving care by rolling out the new federal education and training program, the Lupus Initiative, within NYC’s public and private healthcare systems.

The S.L.E. Lupus Foundation started the fight against racial disparities 15 years ago, pioneering a new paradigm for community-based health through lupus awareness, education, support and advocacy in NY’s most underserved neighborhoods. The organization went on to raise lupus health disparities to the federal level. Working with the Office of Minority Health, Office of Women’s Health, and the U.S. Surgeon General, the S.L.E. Lupus Foundation secured Congressional funding to create the Lupus Initiative. Now, as the Initiative gets set to launch nationwide, the S.L.E. Lupus Foundation is closing the loop, circling back from Washington to bring its signature advocacy program home to New York.

Noted New York scientists Philip Kahn, MD, and Jane Salmon, MD outlined the impact of the disease and the research progress underway. Our Medical Advisory Board Chairman Dr. Bruce Cronstein emphasized the city’s leadership as the country’s hub for lupus research and care. He acknowledged the S.L.E. Lupus Foundation for helping build New York’s expertise in lupus by supporting young investigators, many of whom have become thought-leaders in the field.

Need for Professional and Public Awareness
The challenge lupus continues to pose for healthcare providers was emphasized by Betty Diamond, MD, The Feinstein Institute for Medical Research. “Several factors that put minorities at risk for lupus cannot be helped, but issues such as poverty, healthcare access and patient education are well within our control to change. Health disparities in lupus among minorities are dramatic, widespread and well-documented; yet 63% of the nation’s physicians recently surveyed are unaware of these inequities. It is critical to train all healthcare professionals, medical students and patients to recognize lupus early when treatment can have the greatest impact.”

Implementing Solutions
How community leaders can incorporate the new training/education into the NYC healthcare system was the focus of a panel discussion. Participants included city leaders Catherine Abate, President/CEO of Community Healthcare Network; Karen Boykin-Towns, President, NAACP Brooklyn Branch; Maria del Carmen Arroyo, Member NYC Council and Lena Morgan, a woman living with lupus and active with the S.L.E. Lupus Foundation.  One consistent theme was the need to educate the public as well as professionals to facilitate diagnosis and foster patient self-advocacy. Each panelist echoed the call for a comprehensive conversation among health and community leaders to find ways to make lupus education an integral component of public and private community-based healthcare in NYC.